My poor baby has torticollis/plagiocephaly :(

Sorry I've been mia a bit lately, I'm just beside myself with worry and sadness.† just took Natasha to the ped yesterday by myself because Jeff is at work because her head seems to be tilted to the left recently. Well it turns out she has torticollis and plagiocephely - community.babycenter.com/post/a2381... (see here for a quick description). She will need immediate physical therapy to start Friday and a 50/50 chance of needing to wear a helmet to reshape her skull for months (23 hours a day, also not covered by insurance and costing $3-4K) - that appt. with the Children's Hospital plastic surgeon is on 5/13. I've been crying and not handling this well at all. I know I should be thankful that it's a correctable situation and not life threatening, but I don't want my baby to have to go through any uncomfortable therapy or wear a helmet. This is just awful! Every time I look at her head I see something different - one time I don't notice her flat spot, the next time her head looks horribly misshapen. I don't know what I'm seeing anymore and I think I'm going crazy. I'm also kind of mad and resentful about this. I know the tort probably happened when she was in the womb but it could have happened during delivery and all the what if's about had I not been induced come up. Also, at our 2 month appt. the doc said that her head had been rounding out nicely and now suddenly it's worse. :(. I feel horrible because maybe I should have forced more tummy time even though she was screaming but then I found out her neck may be in pain during tummy time and it could be due to the tort. I'm also mad that the flat spot is now on the back of her head from sleeping on her back at night (like they tell us to do!) and maybe the crib and the pack n play surfaces being hard made it worse. There are more and more cases of this since people started putting babies on backs to sleep. Well the ped and we agree to alternate sleeping on each side for her now while supervised and we are repositioning like crazy. I don't know what I'm going to do putting her through painful therapy and especially if she has to wear a helmet during the heat of summer. I just don't know how I'm going to be able to be strong enough for my baby and I feel silly since this is not threatening her life like some parents have to face.

Please pray for my baby and for us to be good parents to get through this.

Comments (26)

Don't you dare feel like your being silly.. omg I cried because Josie had flaring baby acne that looked painful.... Listen.. you are human and everything you are feeling is 100% normal and to be expected- brand new mommy or seasoned mommy.. you are a mommy now and of course you are feeling worried..upset.. sad... etc...¬†

I'm so sorry you all have to go thru this-¬† I hear you about summer heat.. helmet.. physical therapy -¬† there is a baby in our church who wears one.. cutest thing-and seemed well adjusted- thank goodness there is something to correct it at this stage. can u imagine if she had to wear one at age 5?¬† I know, it is horrible no matter what.. but you can get thru this.. look at all you've already gotten through!!¬† You have your husband and family I'm sure.. and Natasha has YOU.. you can do this...¬† don't what if yourself- we all go by what drs tell us for the most part.. i remember when he told you her head was rounding out nicely... thats what info you were given.. we are not dr's.. so we listen-

Natasha is very very lucky to have YOU as her mommy Tanya, it will be ok... everything is correctable- and its ok that you are feeling what you are... from a sliver to stiches to disease- we all hurt when our babies hurt and are uncomfortable... you just hug her and kiss her and love her like only you can... you can do this!!!

Jessica - thank you so so very much (HUGS) I really needed to hear everything you just said right now.¬† I know that we will do whatever needs to be done no matter how hard it is going to be.¬† You are so right that it's good we caught this early and that it is totally correctable. I'm sure she will be adorable if she needs the helmet, but I also worry about her feeling like everyone is feeling sorry for her when they see her.

There is a possibility she will only need the PT, but I have a feeling they will push the helmet.¬† When I called to make the appt. today they told me to plan on going straight down to the helmet shop to get her fitted right after the appt. and the group meeting called "helmet clinic".¬† I'm kind of put off by that actually because they are assuming she will need the helmet before she is even seen for a consultation.¬† I can't help thinking in the back of my mind that maybe the doctor is getting some kind of kickback from the helmet sales since they are so expensive.¬† But that's probably me not wanting to put her in one/wishful thinking and paranoia. I also just read another post from the National Children's Hospital doctor saying that the helmet does the same amount of good as PT and waiting for things to correct themselves. OMG I just don't know anything anymore.¬† I guess I have until her appt. on the 13th to research and decide what is best practice.

I started doing some stretches with her I found on the support group on BBC and she only tolerates like 4-5 of 15 repititions we're supposed to do.¬† I'm not going to go crazy with those though until we see the PT on Friday to make sure we are doing things correctly.¬† My mom and husband are going with me too so we all know how to work with her.¬† I'm so exhausted and confused from reading so much and pushing all the tummy time on her today is making the baby more tired too.¬† I guess I have to get used to how this is, because this is our life now.

Thanks again Jessica, it means the world to me to hear your encouragement!

Hi Tanya! ¬†You are a great mom and you guys will get through this. ¬†The helmet seems super scary at first but in the big scheme of things it will be okay. ¬†I think it's more common than you might know. ¬†My girlfriends daughter was 6 months when they discovered her torticollis. ¬†She had a flat side of her head and got a helmet. ¬†The PT & helmut worked great and she's an adorable 20 month old now.

I took my daughter to a chiropractor for reflux and the first thing they noticed was her head turned to one side. ¬†I looked back at all her pictures and sure enough, she was always facing one direction. ¬†I had been at the ped's less than a week before and was kinda mad they didn't catch it. ¬†We went the chiropractor route mainly because that's where it all came up. ¬†It's working for us and is something else for you to check into. ¬†I posted a question about the chiro on a local message board and sent you a copy of it. ¬†One PT responded and provided a link for the exercises.

Lastly, if you go the PT route. ¬†Stay on the exercises and do them as often as you can. ¬†I personally don't think I'd wait until the 13th just because the sooner you start on it the better. ¬†My friend's daughter was 6 months when they started and she said it was difficult to do them with her as she increased in squirmyness. ¬†The second thing she said is that she wished she'd gone to the nearest Children's Hospital for the helmut fitting. ¬†She went to a local place where they still did a plaster mold for it and she said it was a less than awesome appointment. ¬†Maybe Children's does some sort of digital scan?? ¬†

I'm babbling now.. good luck, my thoughts are with you guys and Natasha is going to do great!!

Thanks to you too Julianne (HUGS) you ladies are truly a comfort to me right now and I appreciate you!¬† I did read the post you sent me and very interesting.¬† I would consider a chiro if they just did soft tissue work as well but I'm not sure what my insurance even covers.¬† I'm researching the best things and methods all this week.¬† Actually my first PT appt. is this Friday with a pediatric specialist (although I looked her up online and it seems that's one of 10 specialties she has so I'll have to interview her well).¬† It's the Children's Hospital appt. that is on the 13th with the plastic surgeon and that's the first they can get us in because that's when the group meeting or "helmet clinic" is scheduled and they only do the private consultations at the same time for some reason.¬† I find the whole thing suspicious, but that's my mind going off again probably.¬† We are starting the stretching today and so far she does not like it one bit but what can we do?

Torticollis and plagiocephaly are usually related to womb position.¬† It doesn't happen quickly. It happens from staying in the smae position for a long time. I am a pediatric O.T and have treatment many torticollis cases.¬† If you search my site www.milestonemom.com, you wil find an article on torticollis and it gives instructions on how to do the stretch.¬† It also suggests other improtant exercises becsue the neck tightness can interfere with proper alignment, crawling,etc.¬†

Therapy is SO helpful and children with torticollis get better fairly quickly.¬† the stretches may be uncomfortable, but not the rest of the therapy.¬† Most of my patients loved the ball activities.¬†

The helmet is really helpful for rounding out the head, so it is a good thing.¬† Babies forget they are wearing it.¬†

Please look at the article.¬† When I originally posted it, I got¬†a lot of moms from this site commenting.

Nancy, thank you very much!¬† I checked out your site and it was extremely helpful. I did actually get out my yoga ball and try the tummy time.¬† She liked it at first but I have one yorkie (dog) who goes absolutely NUTS around the yoga ball and kept interrupting us so I had to lock it away from him.¬†

I was curious, what is the difference between a physical therapist and an occupational therapist?¬† The PT we're to meet with Friday is supposed to call me today and she has one specialty with pediatrics.¬† Are there any specific questions I should ask her?¬† Are there any you might recommend in northern Detroit suburbs if she doesn't work for us?

Tanya!¬† Please don't beat yourself up over "being silly" (you're not)!!!¬† If I were in your shoes, I would be beside myself.¬† Your distress over this only shows how much you love your little girl and what a good mom you are!¬† I don't have a ton of good advice -- but will definitely be praying for you, your hubby, and your sweet little girl!

--

~Beth

Wife to Tom, Mom to Bryan, Emily, Colin, Kaitlyn, and hoping for one more baby!

Oh Tanya big hugs for you! ¬†I will be praying all goes well for her and for you and your dh. ¬†I don't have any advice but want you to know you are an awesome mommy, don't ever think otherwise. ¬†Please keep us all posted. ¬†

Beth and Kel - thank you both!¬† I love this group and you ladies so much!¬† (HUGS)¬† I'm still in research mode and dying to get to physical therapy Friday.¬† I did end up calling another PT place and left a message today that is affiliated with the Children's hospital. I figured I should at least interview 2 of them like I chose the ped for peace of mind.¬† I also called the plastic surgeon's office back again and found out the recommdation for a helmet is solely based on measurements and how far the skull is deviated, factoring in age so it's not really subjective.¬† I'm taking my own pictures before and after to see if there is even a subtle change after doing PT so I can show them myself too.¬† Also, they told me most insurances to cover the helmet if it's needed medically and that's the only time they recommend them anyways.¬† My mom came over today and we started some gentle stretching we saw online.¬† I'm not overdoing anything with her of course until she gets a proper evaluation, but I just don't want to do nothing.¬† I have her sleeping on her belly on a soft sheepskin in the pack n play in my office a lot with her head in the proper position.¬† I'm not leaving her side the whole time but hey, it's worth it if it works (at night I still put her on her back as much as I hate it now).¬† We've also been much better at tummy time too - she did a whole 20 minutes straight on my tummy last night!¬† That's a record with no crying. I think the stretching is making it less painful for her already, well I hope so.

Hi Tanya - I read this in the car yesterday (stuck in traffic on my commute) and was not able to respond until now.¬† I've been thinking about you and Natasha since then.¬† It looks like we all agree that we'd have the same feelings if in the same situation. You are handling it amazingly!¬† I am thinking of you guys!